Nurse Consultant Haemophilia
Great Ormond Street Hospital, Great Ormond Street, London WC1N 3JH, UK.
Royal London Hospital, Whitechapel Rd, London E1 1BB, UK.
In this second edition of The Journal of Haemophilia Practice, Robin Sager questions the diagnostic labeling of women with inherited bleeding disorders. She asks whether a haemophilia carrier with symptoms is a haemophilia carrier, a symptomatic carrier or a woman with a bleeding disorder. Furthermore, she ponders whether a diagnostic label of “woman with haemophilia” or “woman with a bleeding disorder” would afford such women better access to healthcare and outcomes more like those we expect for males with haemophilia. But would such a revision risk health care services losing contact with asymptomatic carriers? And how good are we at supporting the clinical, genetic counselling and/or psychosocial needs of mothers, sisters and daughters of males with haemophilia, whether symptomatic or not?
The Journal of Haemophilia Practice is published by Haemnet.
Haemnet is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.